Thursday, September 29, 2011

I am sorry to wait so long to post. I know that we have many wonderful people checking in on Miss K. Truth is that we really don't have much more info than we did before.

Today she finished her 6th dose of IV steroids. For the first time ever.....she wanted to come home. Normally, she cries when its time to leave her friends at the hospital. She was ready to get back and play with her brothers.

Kaidence is physically doing well. She has been pretty tired the last 2 days but cardio seems to think that the rejection may be catching up to her. Tonight, being home with her brothers seemed to lift her spirit and level of energy. She even ate a good dinner (Thanks to one of my MANY wonderful friends). In 2 weeks we will try to get back to her normal activities and let her live as normal of a life that we safely can.

We bumped her echo up a day earlier because of the fatigue. Her echo still looks great. When people have Coronary Artery Disease certain parts or walls of the heart don't have good movement but Kaidence's are moving well. Her heart just hasn't gotten the memo yet as to how sick her arteries are. I pray it stays that way!

The shock is still so raw but things are starting to set in a little more. We have talked with Kaidence and she will help us make the decision on whether or not we list her for a new heart. She knows that either way we will be ok. Now some may think that you cannot let a little 4 year old help make this decision BUT Kaidence is different. This little girls understanding in some areas is far beyond mine. She knows her heart is sick but she doesn't feel sorry for herself. She lives her life to the fullest. She is so happy despite all she goes through. Over the years we have talked about death when she has brought it up. She tells me what she thinks heaven will be like. When letting her know the other day that she could help us choose what we should do she said that when her heart got sick that she wanted to and be with Jesus. I told her ok and then we talked some more about what she thinks heaven will be like and who will be waiting for her. I don't ever want her to feel like she cannot move on because of how sad we will be. However, the next day she woke up out of bed and one of the first things out of that little girls mouth is "I want to get a new heart".

So as of now and if or when the time comes we will re-list her for a heart. She may change her mind and that is ok too. If she wants to fight to live, who am I to tell her she can't? I don't know what Heavenly Father has planned for my baby girl. I hope and pray that if she has to leave us for this time that it will be in a peaceful way and time. I don't want her to get that sick again. This little girl knows she is loved and treasured. Her spirit is precious. She has no idea of how many hearts and lives she has touched but one day she will know.

The boys are hanging in there as well. I have such amazing boys. I am so proud of them. We are trying to be honest as to what could happen but focus on the now while still keeping that communication open for them to express themselves. I don't want them to be afraid to talk to us or ask us questions. Kids are smart and they need honesty on their level.

Monday we will have another echo. If ANY changes are detected they will re-list Kaidence. Her next heart cath will be on October 27th. I hope and pray that somehow and someway this disease will no longer be or that it will lessen in severity and she can be safe. It shouldn't happen but I know it can happen, I just don't know if its part of Heavenly Fathers plan for her.

I want to thank you for the love and kindness you have shown. Your prayers are lifting me out of the torment that has had my heart for the last few days. I ask that you also please pray for her wonderful medical team. I pray that they will be in tune to promptings even if they may not understand the reasoning. Your prayers for our family are the greatest thing we could be given at time. Mike and I are still trying to figure it all out.

"Be not afraid, only believe" Mark 5:36 If Kaidence isn't afraid, why should I be?

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comments:

I have been standing by my blog the last two day's waiting for any update as always your post move me to tears, Ms.k is such a beautiful little girl and I'm thankful to have been able to know you both.Little Ms.K has been the topic of my family the last few day's I called my mom as soon as I read your other post the other night,My best friend in Georgia told me Just yesterday that she felt like she knew Little Ms.K by how often I speak of her and her Journey and How Ryan and I came to know you and your beautiful family:) I couldn't be more thankful to know such a truly amazing family.know that were always thinking of your family and little Ms.K if you ever need ANYTHING please let us know.Love, The Powell's

I'm new to your story and am amazed by your strength and faith. I also know that when our Heavenly Father is in charge, then we are in the best hands possible. I am a heart transplant recipient of 10 years. I found out I had CAD about 3 year ago. They placed 5 stents in my heart and switched me to Rapamune. I have had no further progression of this disease. I hope this gives you some hope. You will definately be in my prayers.

Shauntelle, I am always so touched by the things that you write and the way you express your feelings, the tears always flow as I read. I have no doubt that the Lord know's your fears, frustrations, and concerns for Kaidence. But he also know what a powerful creator you are as well, and he choose two of the very best parents for Kaidence. I think that letting her voice be part of the decisions is a good thing to do. She is very close to the spirit and she does know things that we don't. I'm sure that there are times that she has a chat with grandma and ask for her advice as well. I sent out a plea for prayers to all of my FB and e-mail friends and they in turn have re-posted her information as well. So I know that there are tons o prayers that are being said in her behalf as well as for the rest of your family. You are amazing and I love your family so much. Hang in there miracles happen every second of every day. Love to you all, Aunt Deb

I have not stopped thinking about you. I am kind of in a panic about all of this... I can't relax. This post was so beautiful. all of it. I just joined the heart transplant family group... there is a woman who's baby was transplanted and she received another heart transplant years later. I am with K... re-list. Oh, I can't wait to meet her. She is such a strong girl. We will keep praying.

After this weekend, my favorite quote is from Pres. Monson: "It is better to look up."We also received unexpected bad news at my daughter's last heart cath. It took just over a month for me to process. Then I started to "look up" again....and to feel led by the spirit. He whispers peace to my heart at unexpected times.You have every right to be led and inspired to just the right thing at just the right time. I'm really sorry things didn't go better. I will pray for you and your little Kaidence.-Nanette of HeartBabyHome

I found your blog through another heart moms blog. I have to say, you and your family are amazing! I will keep you all in my prayers. If there is one thing I know for certain, it is that the Lord has his plan for each of us and he gives us tough times to make us stronger. What you and your family are going through right now, will only leave you as stronger people. May his spirit be with you to comfort and guide you during this time.

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About Me

I spent 127 Days at Primary Childrens Hospital in the PICU. I was born healthy but became ill after catching a virus that caused my Cardiomyopathy (an enlarged heart). My heart was not pumping and I was dying. We were granted special government permission upon emergency use to implant the "Berlin Heart" an LVAD (Left Ventricular Assist Device) for babies. This would give me more time to wait for a heart. I was the first patient in the state of Utah to receive this device. I received the experimental device in November 2007. It saved my life and I received a heart transplant December 2007, two days before Christmas. My new heart has given me a new chance at life and I am forever grateful to the fammily that gave me my "Angel Heart". Today I am 5 years old and awaiting a second heart transplant due to severe Coronary Artery Disease. My family and doctos were shocked to learn that I needed a new heart once again.
Our little Kaidence is a tough fighter. Our little Fairy of Faith.
This blog documents her Journey of FAITH!